I'm new here...been diagnosed recently (last two years) with Bronchiectasis; had never heard of it before the doctors told me about it. I'm generally quite fit (used to enjoy sports) and healthy, but...
Felt relatively fine, but found that I've been:
- getting ill really easily, especially when travelling (train/plane)
- generally exhausted
- Been 'diagnosed' with secondary asthma and hayfever - never had any of this until the bronchiectasis
- When I get ill, it goes straight to my chest within a day
anyone else found they've developed these?
Frustrated that the only thing my doctors have done is prescribe antibiotics, even before sputum results. Having physio soon, but nothing else seems to be an option. What do you recommend/find helps?
Was the bronchiectasis diagnosed by CT scan? If so, what stage is it at? Is the asthma controlled? What treatment are you on? It sounds as if you need to see a consultant who specializes in inflammatory airways diseases. A good respiratory team is necessary to help you to learn how to care for yourself effectively. Physiotherapy is good but getting the right medication is important too.
It really is important to prevent these infections because they can cause more damage to the lungs. Also, getting the sputum cultured is necessary so that the correct antibiotic is given.
Good hygiene is necessary so remember to wash hands regularly. Clearance techniques, practised regularly go a long way to preventing recurrent infections - discuss this with the physiotherapist. There are various methods - active cycle breathing, autogenic drainage, devices e.g. Acapella, Aerobika, Flutter valve and drug treatment e.g. mucolytics. Don't forget the influenza vaccine in September and ask about pneumovax at the same time.
Inflammatory airways disease is exhausting, particularly when there is active infection and you are expending a lot of time and effort coughing. You need to get control of the diseases in the best way you can. This does take some time and effort but it pays dividends.
They (3 consultants) wouldn't refer me for a CT, due to having had a number of x-rays and because of my gender/age... I honestly don't know.
The asthma, due to me insisting on something, has been treated with a salbutamol inhaler (as required) and breathing exercises.
I've just moved to Cambridge, and hopefully, they have a better respiratory team than my last group - although lovely people, they were not equipped to help.
I have an emergency pack of antibiotics for when I travel, and am particularly careful with hygiene - but even with these precautions, public transport seems to be my downfall.
I hope they show me these clearance techniques! I've noted them down, thank you.
I'm glad the exhaustion isn't just me - I've been struggling more with that and with the asthmatic-like symptoms, than anything else day-to-day.
You need more than just Ventolin by the sound of it. Inhaled steroid is very important for people with asthma. There are also long acting inhaled bronchodilators which might help. I hope you soon see a respiratory consultant who can help you to get control of the asthma.
Bella395, you really have so much knowledge. Thank you for your very informative posts!
Best,
Lil
I am very affected by the weather. I have more problems in the summer months. Everything goes in to my chest. I also get sick on planes. Lots of germs and bacteria on them.
My goal is to build up my immune system.
I rest a lot when tired and get on antibiotics whenever I feel something coming on.
Everyone is different and you will find what works for you.
Best.
Lili
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Thanks for the reply!
Yes, I've been experiencing the same. Summer this year has been particularly bad... it feels like someone is sat on my chest the whole time.
Planes are the worst for me! I try and avoid at all costs now, but instantly start my emergency antibiotics before the trip, and that's helped somewhat.
I've had to take quite a bit of time off to try and rest to prevent it going to my chest.
Really appreciate knowing I'm not experiencing this alone.
Thanks!
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It does make such a difference knowing others are experiencing the same issues.
We can help each other. 😊
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I don't have the luxury of being able to build my immune system up. I have several autoimmune diseases (RA, Vasculitis, Sjogren's Syndome) so I have to take immunosuppressants on a permanent basis.
I have been dealing with bronchiectasis since early 2006 from a NTM infection first. I don’t know if u have used a nebulizer with liquid albuteral and hypertonic saline solution before. I have found it helps with breaking up the mucus so I can cough it up and breath the easier. The fatigue problem is something I deal with also...use to run marathons, workout a lot, that has all changed. Hang in there!! This isn’t an easy road to follow.
Sorry to hear all that! Yes, I used to do competitive rowing and struggle to go to the gym these days. I’ll ask them about the nebuliser/saline you use, no harm in trying it out.
Nice (although I use the term loosely) to know I’m not the only one with fatigue issues,
Yes, see what yr doctor thinks about it!! Can’t hurt to try. Decided to try stem cell therapy for my bronchiectasis this September, let u know if it helps!
I have Cylindrical Bronchy and had a ct scan and a rescue pack of antibiotics in the cupboard. MIne is mild but I'm under the Respitotory team and going to do the 6 week plan. I've found I've been treated very well, lots of advice etc and its been quick. I've had sputum tests and they are ongoing every 3 months, I don't need the breathing stuff yet as am active and generally well. I understand I was born with it but it did'nt show itself untill I contracted pnumonia 3 years ago. The much maligned NHS has been superb to me. I travel as normal just back from Tunisia which was lovely as the dry heat really helped the Rhumatoid Arthrius. Cypress in September and the Bonchy won't stop me just yet. I do walk a lot and swim and do keep fit just not as quick as i used to do it. Walking and talking is sometimes a problem but I can cope with that as do make myself short of breath deliberatly when excercising and I sing. Not well ! but it does help lung function. Good advice that was from my neice a household name in the singing proffession.
Great, you're being treated so well! I might take singing back up, then, if you find it helps! Thanks for getting in touch
I was initially diagnosed with late onset Asthma, but after spirometry and CT scan I was told I had Bronchiectasis. After growing Pseudomonas and also havin Pneumonia (sometimes together). It seemed to clear up and I've had no exacerbations for 3 years. But recently I've been very breathless and wonder if I also have Asthma. Nobody has confirmed it or ruled it out.
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Glad you have got the exacerbations under control! I've been told I have secondary asthma, and they did various breathing tests - definitely worth seeing if it is. I've been told I'm allergic to certain things so get asthmatic-like symptoms, and they've given me inhalers, which have majorly helped. I've been able to return to some sports recently.
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Has anyone held off on antibiotics if they have flu 
Bronchiectasis /pseudomonas- had to stop my ciprofloxacin due to dreadful heartburn.. Anyone else have this problem?
Hello I'm new here 
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